Jwarrior77

This is currently happening to me right now. My heart rate is fluctuating between 100 - 120 while laying down and blood pressure is going way up. Last time I checked it was 147/90. I don't want to check anymore because it fluctuates constantly and I don't want to get any more worked up than I already am. I can actually see my veins very constricted in my wrists. My whole body and heart feels very wired yet my brain has a slight headache and is very tired. It's such a conflicting feeling. If I start to panic everything gets significantly worse so I'm really trying to not do that. At least it's not as bad as my last episode where it felt like fire was in my blood and I was shaking all over. Praise God that it's not that bad. It's at times like this that it feels like I should go to the ER but they never really help and also always give a lecture about anxiety. My parents are tired of this and if I do go to the ER the insurance may stop covering as I've already been there at least 4 times already. I'm hot all over and really uncomfortable. So sorry for this rant right now but I really need to vent. Does anyone out there have any tips to calm down? I'll try laying on my left side to see if that helps as lieze pointed out. It's almost if I know I shouldn't be feeling and reacting like this but my heart and body has other plans. Thanks in advance.

I have this as well. Sometimes I get it strongly in my right ear when standing up, and other times when I put my head in differnet positions such as looking down. It comes and goes for me and isn't constant. When I was younger I remember I would get it when laying down in my bed to go to sleep. Never thought much of it other than it being annoying. Now there is a correlation with it being associated with higher intercranial pressure and possibly CCSVI as a lot of people who have that also report pulsatile tinnitus. Funny enough many people who have POTS also have CCSVI and higher intercranial pressure - but of course not everyone does.

@Scout No problem. And yeah Citrate is among some of the better forms of magnesium as it's absorbed better. The oxide form doesn't get absorbed as well and can even cause problems for some people if I remember correctly. I take mine in a supplement powder that is slightly flavored and mix it in water so it's also more therapeutic than taking a pill. I don't know if that helps me any better but it seems too. Maybe it's just placebo lol. That's crazy that the Metoprolol gave you those side effects. I wonder if anyone else has had bad reactions to it. Hopefully the docs can find a better Beta Blocker that won't do that.

That sucks that they didn't do that much for you especially after the long waiting period. I know how you feel. What were the bad side effects the Metoprolol gave you? I know alot of people say this but having a magnesium citrate drink has really helped me when my pulse and BP go up during an adrenal flare. It acts as a natural calcium channel blocker. Hope you feel better!

Hey @tooyoungtobethistired2 I understand a lot of what you are going through. I'm also on the younger side here so you're not alone. I started getting really bad symptoms back in early May at the end of my senior year of highschool. I was under a lot of stress, not getting enough sleep, and got hit with a virus which basically cascaded me into a nightmare of horrible symptoms. I almost didn't graduate because I couldn't get any work done, was getting extreme anxiety and panic constantly, and just felt awful and didn't know why. To make a long story short I figured out that my heart rate would rise 30 beats + when I would stand up. My cardiologist did a TTT which showed the same thing but he basically shut me down for not having POTS as I didn't fit specific criteria and claimed that I just have anxiety. I also don't pass out and don't feel faint when I stand up. I know your doctors doesn't think you have POTS (and you might not idk) but a really easy way to figure out is to get a cheap pulse oximeter online and test it out for yourself when laying down and then standing up. A lot of times we get nervous at the doctors and that can skew results. Also you're not alone with the depersonalization/derealization. I also developed this during the summer and it was really bad. I basically didn't feel connected with reality or my body. It really does feel like "everything is far away and under water" as you put it. I thankfully don't deal with that now. There's a bunch of videos online on how to deal with it/get rid of it. From what I understand it's basically your brain freaking out from everything going on and the high amount of stress that it basically just "shuts off temporarily" if that makes sense. You should also check for vitamin defiencies that can contribute to it. Trying to relax and not panic really helps it get better. I know it's wayyyyy easier said than done but you can get rid of it trust me. Myself and many other people on this forum experience the panic and shaking episodes and I know how scary it is. It's most likely just high amounts of adrenaline being dumped into your system causing that. I also worried that I may have some serious life threatening illness causing all of this and really thought I was going to die on numerous occasions but I'm still here. A lot of what your feeling right now is that your sympathetic nervous system is abnormally dominating putting you into constant fight or flight. The key is to increase the parasympathetic which calms all of that down. There are also a couple of people who have Autoimmune Autonomic ganglionapathy on here as well so you could probably reach out to them. Sorry this post is so long and kind of all over the place. I have a lot more to say but feel free to ask me any questions. I just want to provide some hope and support. You aren't alone.

I started getting this as well. It also strangely affects my left side. Usually it happens when I wake up in the morning. My fingers will be tingly and my left arm numb. I also have trouble moving it around as if my brain isn't communicating with it well. I just have to wait till the numbness and tingling stops and then I have full control over it again. I also think one of my nerves in my arm is getting pressed during sleep and that's why this is happening.

Thanks guys for the replies and hope. I didn't mean to sound depressed or pessimistic in my original post as I really do believe in having faith and hope. I also believe that there is a cause and answer to every symptom we feel. It's not some phantom invisible illness even though at times it may feel like one. It's just we don't have all the answers right now to what's going on. On a side note I know that Dr. Diana Driscoll was diagnosed with Hyper adrenergic Pots and she hasn't dealt with symptoms in years so it's definitely possible.

Hey man any more updates to your diagnosis? I find AAG interesting.

I've had muscle spasms all over my body for at least 2 years before getting Pots and still have them now. They also tend to flare up sometimes when I worry or stress out but not all the time. Like Bombshell said I'm pretty sure it's Benign Fasciculation syndrome. Its interesting that both BFS and dysautonomia don't have a real known cause or mechanism to why it happens. Go figure.

I've been getting red sometimes raised spots on my legs and sometimes on my hands. They arent pimples or anything like that they are more similar to a rash but not quite. They come and go in intensity. My blood tests are always normal as well.

I can understand a lot of the pain and worry that you're experiencing as I've had some really bizzare symptoms similar to what you are describing. It really is physical and mental torture. I don't have the exact symptoms as what you have however sometimes when I get these "attacks" I get this burning sensation all over my back when I lay down. This is accompanied by involuntary muscle shaking all over my body if it gets really bad similar to a seizure only it's not and I'm conscience the whole time. Sometimes it's my legs other times my torso/whole body. The burning sensation sometimes happens internally too and feels like there is acid flowing through my body. Blood pressure goes way up and I feel like I'm going to die. Anxiety and Panic also greatly exacerbates it. I think for me it's an adrenal surge of catecholamines such as adrenaline and nor-epinephrine considering the fact BP and HR goes up dramatically and heart starts beating harder etc. I can't explain the burning sensation however. Perhaps something to do with histamine? Idk. I can only ride it out and try to calm down. Went to the ER twice when it was really bad and they did nothing for me really and thought it was just anxiety. What I do to prevent these "attacks" from happening is drinking high potency magnesium citrate drink and coconut water that is high in potassium. There was a study that showed magnesium can block nor-epinephrine dumping in the brain and it's helped me out. Also getting enough sleep always eating something and prayer has also helped me a lot. I wish I knew what is actually going on as it's really frustrating not understanding whats happening to your own body. Hopefully trying some magnesium/potassium will help you out as they are vital minerals our body needs. It also calms down nerves if it is related to that.

Can anyone else see their pulse in their eyes? Its much more noticeable when my heart rate is lower and I'm not focusing on anything in particular. Basically my whole field of vision distorts/pulsates with the beat of my heart. I don't hear much of other people talk about this except one or two people over on Reddit with dysautonomia. Ever since getting POTS, I have felt my pulse strongly in many different places in my body but they usually come and go. However the pulse in my vision has stayed pretty constant and only really lessens in intensity. Curious to hear your thoughts.

White Willow Bark supplements have worked for me in the past. The compound is very similar to aspirin and is completely natural with less side effects. However taking a lot of it could be dangerous if I remember correctly so just research it first before you start taking alot.

I do as well. I don't know why it happens. Perhaps abnormal blood flow to that area for some reason? It can even pulsate some times but that doesn't happen that often.

I relate to a lot of what you said as well. People would also mention what happened to your neck or arm not knowing what they are talking about only to look and see that it has become red from when I scratched the area. I get the red back/neck where the shower water hits it and also the white streaks sometimes after scratching which is also interesting that you mentioned that. I'm probably going to go on some antihistamines soon for the suspected MCAS anyways so possibly it will help with this too.

I have noticed this as well. I've always had some visible veins on my chest and wrists mainly but now after getting sick I'm seeing them everywhere and more prominently. It's almost as if they are spreading throughout my body or raising to the surface of the skin. It's so bizarre. If my vessels vasodilate I can see them all over my chest, wrists/forearm, feet, inner thighs, and even my biceps at times if the lighting is right. When they are vasoconstricted its much less noticeable but I can't help to feel like my veins changed somehow. I've heard that there has been research suggesting that histamine release can actually change the collagen in your body to different types which may cause weakening of the blood vessels. I feel like this is a real possibility to why they are different now.

Does anyone experience their skin being super sensitive to either scratches or pressure? Ever since I was little my skin was always naturally sensitive to scratches. If you scratched the skin it would leave a red streak similar to dermatographia only it wouldn't raise. For example a lot of times when I would get a haircut, the back of my neck would sometimes get red where the shaver grazed over that area of skin. My parents noticed when these things like that happened but we always chalked it up to my skin being overly sensitive. However these past couple of years and especially after I developed POTS any amount of pressure on my skin even for short periods of time will make the whole area red. If I would put my head down to take a nap at school the whole area of where my head made contact with either my arm or desk would become red. I know it's not normal because my friends would put the same amount of pressure on their heads when sleeping and never develop these red spots. That was when I was in school, nowadays any pressure on my skin whether it be any object pressing up against it, sitting down, or anything really would become red very quickly. Is this related to MCAS? My sensitivity seems to have increased dramatically after getting pots. I will post a pic to understand what I'm talking about. The one pic is where the seatbelt pressed against my skin briefly. Sorry for this post being so long.

It could be abnormal blood pooling but that generally looks different. It could also be MCAS as a lot of people who have pots have it as well. It can sometimes come out of nowhere and end abruptly. I tend to get weird red patches and splotching on my skin and have no idea to why as well.

Thanks for all the comments. I'm starting to think it does correlate with blood pressure with the faint beat = low BP and forceful = high(er) BP. Whenever I have a weak pulse my blood pressure is generally pretty low. I do think blood volume has something to do with it as well. Also the pulse pressure topic is really interesting that I just learned a few days ago so thanks for bringing it up and reminding me again.

Would taking a supplement such as l-arginine which boosts nitric oxide help with this situation or would it just mess everything up and make it worse?

Anyone out there who has experienced or know of people who have the hyperadrenergic form of pots going into remission? I know it's possible with the more common form however I haven't heard much of the hyper pots going away. I want to stay hopeful thank you. Any input is appreciated.

Does anyone get bouts of their heart either beating very faintly or weak? I can't tell if I'm overreacting since I'm usually used to it beating forcibly for certain periods of time so when it doesn't I may be interpreting it as weak? Idk. I can mainly feel my pulse in my neck very easily and generally when I'm feeling really weak/uncomfortable I check it and it is very faint which is really troubling that can sometimes send myself into a state of panic. This mainly occurs while laying down. I can't tell if it has to do with low blood blood volume/hypovolemia to why it beats like that but it's really disturbing how weak it feels and the accompanying feelings associated with it. Is there anyone out there that experience s their heart beat strongly, normal, and then very faint out there? Any input is appreciated.